I know I shouldn’t complain about being in the hospital for 6 days when I was initially projected to be hospitalized for ten to fourteen days. I don’t know what I was expecting from the process, but it delivered. I knew it wouldn’t be easy, but wasn’t sure what would happen. But true to form, I really didn’t have the “normal” side effects. I had the weird ones.
So, I’m calling it the “first” day, but in reality, it has been three… They just all blurred together. We got to Atlanta on Sunday evening and had the first appointment Monday morning. We were able to sit down with the pharmacist and go over the treatment protocol. Then the lab results came back. They wanted me to have two units of blood before they started treatment. So off to the infusion center for two hours. Yes, just two. I’ve never had a transfusion that quickly before. Normally, it’s at the rate of about 150 ml per hour. On Monday? It was 400 ml per hour. Once all that was settled, we headed back to the hotel to try to get some rest.
Diagnosis day, it’s here again. Some days reach the level you don’t even have to say what it is. Birthdays. Holidays. Anniversaries. But not all of those anniversaries are good things. Some of them are reminders of the world turning upside down. Realizing that nothing would ever be the same. A total change in your perspective, in your life.
As I posted back in October, my transplant doctor wanted me to discontinue my chemotherapy and see if my bone marrow loss was due to it or to the cancer. I had the second biopsy on December 18th, and received the results today. The bad news is there was no change in the results following the discontinuing of chemotherapy. But the good news is there were no cancer cells in the sample, which means the MDS is not progressing to leukemia. Based on these results and other genetic testing, it appears that I have a subtype known as hypoplastic MDS.
Well, it’s been a week since I got my results, and I just realized that I never posted an update. So, here it is.
I got the results Tuesday (October 3rd). We had gone up to Atlanta the night before, as we typically do with morning appointments. The 2 1/2 hour drive up is bad enough without dealing with morning rush hour as well! Plus, it gives us a chance to eat dinner at Cowfish. My taste buds gave out on me part way through, but it was still a fun experience.
We got up the next morning, had a hotel breakfast, and headed on to the doctor’s office. Thankfully this time, we were not delayed by a flat tire the way we were on the day of the biopsy. But I will say… the parking deck of Tower at Northside Hospital was NOT designed for full size trucks. Or really anything above the size of a bicycle. But that’s beside the point…
Since it’s flu season, everyone in the office has to wear masks since most of the patients are immunocompromised. Nikki got another example of why I can’t stand the masks, but it did make for a smashing photo…
So, for the actual results. The cellularity, or how the volume of the cells compares to the other components, was at 10, down from 30 when I was diagnosed. For someone my age, it should be around 70. This means, not shockingly, that the marrow is not producing enough blood cells, and what cells they are producing are malformed. That much we knew. What we didn’t know was that while my CBC levels (which are checked twice a week) had been holding fairly steady, production was down overall. There are two possible reasons for this. It could just be a normal progression of the cancer, or it could be a reaction to the chemotherapy. If it is a reaction to the chemo, it is possible that the subtype of MDS I have could be treated effectively with a different protocol. If it is progression, that would signal to go ahead with a marrow transplant.
So to be sure, they have discontinued my chemotherapy for three to four months and then will perform another biopsy. If the cellularity improves, they will try the new protocol. Otherwise, we will move forward with the transplant. They did say I had several matches in the database, and that is just a matter of which one could come in for the donation first. They also drew [a LOT of] labs for more bloodwork. So things are progressing, even though for now we are waiting.
So for now, we will continue the twice a week bloodwork. I’ll still be getting a growth factor injection (Arenesp) every three weeks to boost red cell production. I’ll also be getting blood transfusions as needed as I have been, and was doing prior to starting treatment. So for now, we wait and see. And as always, pray for guidance and blessing.